Tag: humanity

I guess it’s been exactly a year since I started blogging. I started writing with the intention of gaining some perspective in my life and it totally worked. I’m right and everyone is terrible.

At the start of the year I had my trusty neuromuscular disease which makes it impossible for me to physically care for myself, my mother’s Alzheimer’s had gotten to the point where she could no longer physically or mentally care for herself, auntie had been in my life for a few years helping me try to get her medical help and deal with the endless paperwork x2 that comes with disability. She was the only family member that even pretended to make an effort in my life, but the stress of it was obviously getting to her.

And I was losing my god damn mind so I started this blog.

The major thing I realized is something I already thought I knew; being disabled is like being in a completely different reality that normal people only have some vague sense of, like gravity but really can’t comprehend. What I specifically learned throughout this year, though, is that they willfully remain ignorant because of their narcissism.

That sounds incredibly rude but in some cases I mean it in the nicest way. Some able-bodied people simply never learned that TV isn’t real. When they hear anything about the reality of living a disabled life and how it has nothing to do with your health but everything to do with violent bigotry they try to convince you that any bad situation is an outlier. ABs refuse to acknowledge disability to avoid feeling guilty; those people legitimately don’t know how common and easy it is to step over a dying body while complaining about the smell.

There are some people who genuinely don’t know better and so they are eager to help, impatient for the praise. It’ll get them praise, but they can’t handle it for long.
For my Mormon uncle it was the very minute that I called him to let him know that his sister was sick that he became overwhelmed and he insisted we both be sent to homes. He had no idea why I was so opposed to the suggestion because it wasn’t as if anyone would want to rape me or anything.

I know I heard that clearly because he was screaming it through the telephone.

Auntie pressured me into putting mom into a home and then to make sure I can make no decisions she told them I was mentally ill and all around general liar so I wasn’t allowed to have contact with my mother. After mom got kicked out after week for unruly behavior I found out from the carefully worded discharge papers that she had been raped in the shower. Whether Auntie knew that are not I don’t know but it was the last time I ever saw her.

Up until then, though, Auntie worked incredibly hard to help us but the weight of sainthood became too much. There were multiple times where she would throw my medical cards at me from the end of my bed while yelling at me for not knowing how to love correctly. To her credit, she wasn’t completely wrong.

She said I was being condescending when I constantly apologized for being a burden and then I halted every conversation with the incessant need to thank everyone for just being there. True. It took me being forced into a role-play game before I really understood that.

I like helping people out. I like seeing people relieved and happy when I can unexpectedly provide a solution. I like feeling that I can have at least a slight impact on other people that isn’t horrible.

What I don’t like is people making it weird by being awkward, thanking and apologizing to me every few seconds. When they insist on thanking me it hurts my feelings because it seems like they’re surprised I would do something nice. When people won’t stop thanking me it’s alienating. When someone puts you on a pedestal is not only objectifying but lonely because you’re no longer equal.

What I still don’t understand is what the hell I’m supposed to do.

When I go somewhere I have to get their permission to go. When I do something I have to get their permission to do it. When I eat I have to have proven that I’m worth the waste and produce.

How can I not thank them?

How can I take the risk of not thanking them?

It used to infuriate me and people told me I had no idea what the “real world” was like when the only world they know is Pollyanna’s but now I can’t help but agree. In the real world you don’t have to pretend not to know your friends in public. In the real world you go to the police for help instead of avoiding them. In the real world you don’t apologize to other people when they hit you. In the real world strangers don’t tell you that your God’s punishment on humanity. In the real world you check the mailbox for bills, paperwork to fill out for permission to live for another month.

In the real world a real person wouldn’t have their healthcare taken away for having an extra $100 in the bank, a real person would be allowed to have more than $2,000. Especially if everything was as expensive in the real world as it is here.

Even after a year finally coming to terms with never getting the promotion to human I’m happier than I’ve ever been in my life.

Although I have to fight for it every day I’m still living in my home, unlike my ancestors. Even if I’m not allowed to own it.

Also unlike my ancestors I’m trapped inside my bedroom but I have the technology to talk to people all over the world. Not people from the real world but people like myself who are going through the same things that I am. I never know how long I have them but thanks to the sheer number of us I’m never alone. More and more of them grow exhausted and are forced to commit suicide but it’s a less lonely than it would’ve been even just over a decade ago.

We have the ability to communicate and create things as long as it’s not in exchange for currency and because of that and realizing that there are people in the real world who do care about what’s going on in the outskirts of The Real World™; AB and NT people my age, millennial’s who have helped me survive with much more dignity than any other American generation has before them.

I’ve proofread homework in exchange for dinner. I’ve written essays on Deadpool in exchange for toilet paper. I’ve reviewed movies for hair dye.

I have no hope for society itself but I have hope for humanity now that I know that there are people unlike my family but things haven’t changed enough for me to even have a conclusion to this post. Still, I have the ability to make this post and as pathetic as it is I’m thankful for that.

I was born with a neuromuscular disease which makes my muscles and bones weaken until I prematurely die.

I’ve always been a temporary fixture in my family’s lives, a genetic embarrassment, a social burden. A week before I turned 13, my father, a decorated Vietnam vet, was murdered by a drunk driver who only received community service. My mother developed aggressive early onset dementia as I got out of school and now I am her caretaker and sole provider but the only thing I can provide is a cut of $850 I receive each month from disability.

I was put in special ed although I took all the same classes as my nondisabled peers who consistently received things like detention or passed with Ds and Cs on their report cards. I was an honors student K–12 because I had to be; if I didn’t it would be evidence that because I had to sit in a chair with wheels I was underperforming and would be a bad influence on the normal children. I was never at risk for detention not because of my good behavior, but because my consequences were to lose the privilege of a standardized public education. Not complaining was a lot harder than studying because (and in spite of) my being a special ed student required attendance from me in the segregated facility, away from my classes. The short bus dropping me off at school and back at home hours late each day because of understaffing.

As hard as it was, I managed it, but I couldn’t do the same in college and I had to drop out. $850 a month couldn’t cover transportation, food, assistance, etc. even though a scholarship could provide textbooks.

I’ve written my own books; books on science and spirituality as well as an array of fiction. Books that were well received and still sell consistently, but I’ve never received a cent from them and can’t hold my own copyrights. As my health degenerates I am more and more dependent on the healthcare I received through disability so I’ve had to forfeit the rights and earnings of everything I’ve created because as time goes on I can create less and less but if I get taken off of disability I can’t get back on. On paper it looks fraudulent that someone who is supposedly as terminally ill as I am can somehow go off of disability and support myself for a limited amount of time.

I can’t be a true friend, neighbor, or citizen. I can’t leave my house; I can’t afford the bus fare for the handicap bus. I can’t show my face in public; two years ago which bashed out my front teeth but my health care can’t provide treatment. I can’t connect to people; the worse things become in America the more I am blamed for being nothing more than a leech, a useless eater.

The social model of disability was created in 1975 by UPIAS (Union of the Physically Impaired Against Segregation) but was coined as “the social model” in 1983 Mike Oliver, a disabled academic.

Disabled people didn’t have a civil rights movement until the 80s and much like the feminist movement it was both allies and the most privileged among the disabled who got to speak. At all.

It wasn’t until the 70s when all states within the USA finally did away with “Ugly Laws” which were their actual names. It made it illegal for disabled people to go in public. This was due how many able-bodied people who had become disabled by contracting polio and soldiers coming back from war. It was never about minorities.

The ADA, Americans with Disabilities Act, was created in the 90s. Credit for this is a little varied and a little controversial. A large reason why the ADA was created was because of the AIDS epidemic. The queer community couldn’t find help from the government to get funding to find a cure or to treat patients. The only way to get what is essentially disability rights was to reassociate themselves with the disabled community after sexual and gender minorities were taken off the DSM 5 (Diagnostic and Statistical Manual of Mental Disorders.)

Not to suggest that we, the disabled community, renounce the DSM but there is a large dissent growing. because of what it’s become and how it’s being used.

The key to this was the social model of disability. The government didn’t see GSM (gender and sexual minorities) as disabled people but the case was made that they had become disabled from society because of the disease they contracted which even though patients remained able-bodied was still a terminal disease with no cure in sight. At least at the public know of.

The LGBT™ community now rejects the identity of disabled, although many people in the community never used the word to refer to themselves in the first place. They now celebrate the fact that things like homosexuality are not seen as a disability; that achievement was made through the social model of disability and would not have happened without activism from the disabled.

You might be thinking of intersection at this point. The modern LGBT™ community is largely criticized by DM (disabled millennials) communities because of this and the fact that things like Pride parades want made to be accessible to physically and neurologically disabled people. In the last few years things have gotten better accessibility wise in some states, in certain areas.

There is animosity amongst some DMs toward the LGBT™, primarily the disabled sexual and gender disabled minorities both for issues like these previously stated and the 2016 Sagamihara genocide in which many disabled people were euthanized inside their segregated neighborhood (something like a group home) by Satoshi Uematsu who had written a manifesto calling for the extermination of disabled people globally. This happened about the same time as the Pulse shooting which was widely reported on and the LGBT™ community in particular refused to ally for their disabled members at that time. Even when the names of all the Pulse victims were released whereas in Japan none of the victims names were because it would’ve been embarrassing to their families if people found out they were related to someone disabled in the first place.

The public was forbidden to pay their respects or leave flowers or candles at the site.

Tracking back a little, on through the 80s there were also many disabled protests and activism that didn’t get reported on unless it was a “die in” or the Capitol Crawl. A die in is when disabled protesters sit in public spaces, fasting, and peacefully refusing to leave. These resulted in good for TV moments like public assault by the police.

Much like what happened earlier this year when the radical disability activist group ADAPT (with the slogan “adapt or die”) were violently assaulted and arrested and then detained in inhumane ways and places. The first two were largely covered in independent media but information and proof of the latter came from twitter. Because the cops didn’t think to take away their cell phones when they were arrested or detained. Although, they pulled people out of wheelchairs so I’m sure many people’s cell phones got busted so someone must have had an old Nokia on them.

Yes, those are zip ties the police arrested them with.

The Capitol Crawl was done by early members of ADAPT and it was a major event which is given a lot more credit than it actually intentionally achieved. The Capitol Crawl was a protest in which disabled people got out of their wheelchairs and left assistive equipment behind like crutches or walkers and slowly climbed up the White House steps while staff walked past. A now iconic photo was taken of Jennifer Keelan who, at the time, was a young disabled girl who was very white and cute and insisted on making it to the top to complete the protest so the public actually paid attention.

After that it was a lot of boring political legislation and drama between marginalized activist groups.

The ADA was created in 1990 which was based on the social model of disability. The medical model (which excludes people like AIDS patients) is still heavily embedded in many laws which is why things like segregation haven’t been made illegal. Forced sterilization was delegalized across the United States in as recent as 2010 under laws created for the disabled but had been extended to POC (remind you of anything?) The last victim was in California; reparations are being legislated for victims in North Carolina and Virginia.

In the past, disabled people were usually killed at birth, given a mercy killing if they were NTAB and became disabled, or simply didn’t live long partly because of the lack of medical advancements but in greater part because they were marginalized and disabled from society.

Millennials are the first generation of disabled people that were allowed to reach adulthood because of things like the ADA. We are also the first generation in the world to have the Internet our entire lives and due to things like segregation and lack of accessibility we built our communities online through social media. Just like other millennial groups. We are the children they fought for and we owe them our lives and our health.

Obviously many of them are still alive as this is relatively recent history and they are like the parents of the disabled community.

They are completely out of touch and have animosity for DM (disabled millennials) because many of us have different philosophies. One is we don’t want to write letters to Congress to beg for rights, we want to destroy society like other millennial’s in marginalized groups. Essentially we want to make a better world and not put Band-Aids on bigotry.

With the rise of Nazi activity and the fact that it’s actually being covered in the news is especially a big issue for disabled people as the Nazi party used propaganda like mercy killings and disabled being “useless leaders” to carry out our genocide and use the legal precedent to go as far as they did. The infamous gas chambers themselves were first created for the disabled population. For further information the victims were referred to as T4 patients which refers to the preferred drug for execution, Aktion T4.

The number four refers to a street address Tiergartenstraße 4 in Berlin where beginning in 1940 the “Chancellery department” where people received paid training. The most accomplished that went on to run the gas chambers were sent to run them in concentration camps. There were 70,273 T4 victims between September 1939 to August 1941. It was then banned due to what is referred to as the most influential protest since the rule of the Third Reich; NTABs had legitimate concerns of how many and how quickly people were deemed disabled enough to be a T4 patient. Of course, it still continued on. Primarily by Catholic authorities in Germany.

To be fair to Germany, the United States was far more extreme in eugenic philosophies (just the word didn’t have the gravity it does post World War II so there is a misconception that America were the good guys but not to eugenic policies were based off of America’s political philosophies and laws.

Our two groups usually don’t interact very much, even online, but if you follow disabled bloggers or people on twitter you will see them complaining about how people particularly treat “young disabled people” or DMs.

Those disabled people who consider themselves liberal or conservative and especially people who subscribe to the medical model of disability are a sub–community but they are used to being the entire community. They are a sub–community of which is largely irrelevant here because their philosophies are irrelevant.

This subculture of disability has no term to refer to it specifically, one has yet to be coined, on this issue I welcome old disabled people offer up a term they would like us to use to refer to them. There hasn’t really been a need for a term thus far because, as I said they are irrelevant, and we only talk about relevant things so there hasn’t yet been a need for one.

But I sincerely welcome them to coin their own term but I caution them from doing it on social media as words that are “created” on social networks like Tumblr are regarded as… I don’t know house to put this other that they are irrelevant. Those terms are given little credibility because they don’t have a long history which can be sourced before the invention of social media unlike the term “social model” of disability despite how similar they sound.